Wednesday, May 18, 2022

World Purple Day: Our Journey with Epilepsy

Epilepsy Awareness (Wikipedia)

Editor’s note: This is a story written as the personal experience of WYDaily Managing Editor, Nancy Sheppard. It is not intended as informational nor for reporting purposes. 

I will never forget that day.

I was sitting in my bedroom when the phone rang. I looked at the caller ID and it was my son’s neurologist. I felt the color wash from my face as I listened to her tell me the results of Ben’s recent EEG… she was diagnosing him with epilepsy.

One of the many fears that a parent harbors regarding their child is that of the “unknown.”

There is nothing more important; nothing greater in this world to us than our children. We would do anything to protect them. When things happen that are beyond our control, it is a disarming feeling. I spent days crying; holding my son close… wanting to do everything I could to make this disorder go away and to be able to keep him safe.

But Ben was no stranger to challenges.

At two years old, he was diagnosed with an Autism Spectrum Disorder, with his particular developmental deficits being in communication and socialization. He couldn’t speak until he was four years old. But with these challenges came the ability to see the world through a new set of eyes.

My son has an eidetic (or “photographic”) memory, having taught himself to read (with comprehension) at two years old. He would spend his time engrossed in books in order to acquire new knowledge. By the time he was five years old, he memorized the flags of every nation, the different presidents, and developed a keen interest in history and world cultures.

From the moment of his diagnosis with autism, we aggressively sought early intervention, treatment, and therapies. At times, it was an all-consuming thing. But his growth as a result of our hard work was outstanding.

Autism never scared me because it couldn’t hurt my son. Epilepsy could.

Ben had this habit of spacing out for a few seconds and after, he would seem confused or even aggressive.

During a session of in-home Applied Behavior Analysis (ABA) therapy, I caught one of these moments. I asked his therapist about it, wondering if it was a typical behavior associated with autism. Ben’s communication was rather limited at the time so he couldn’t relay what that moment was like for him. His therapist encouraged us to consult with a neurologist because she was concerned that he may have been experiencing a seizure. My husband and I immediately called the local pediatric hospital and scheduled an appointment.

I never knew seizures could look like that.

Seizure disorders don’t run in my family nor did I ever know anyone with one. I assumed seizures looked like grand mal seizures, which are characterized by losing consciousness and having convulsions. I never knew that these brief staring spells could also be characteristic of a type of seizure.

I knew very little about epilepsy when Ben was diagnosed. As I type this seven years later, I admit that I still don’t know as much about it as I probably should. But looking back at those early months after his diagnosis, that vulnerable feeling of overwhelming fear is still very vivid.

Ben’s particular seizures are called “Absence Seizures.” This means that there is abnormal electrical activity in his brain that causes a momentary loss of consciousness.

For my son, these happen in the occipital lobe of his brain, which controls vision. During his seizures, my son can’t see anything. He has always described them as his “blanks.” Sometimes he would tap two fingers together. While at others, he would just stare. But for ten to twenty seconds, my son would be held hostage by the rush of electricity in his brain.

We went round and round trying to find the right prescriptions, the right treatments, and the right doctors for Ben.

Specialists told us that, because Ben was diagnosed so young, we were more than likely able to stop his seizures from developing into grand mal ones. While this made my husband and I feel very hopeful and grateful, it still did not quench the sobering reality that our son had this disorder and that we had to stay ahead of it.

It took awhile to discover the antecedents for Ben’s seizures. Sometimes they would be triggered by heat, while at other times, it could be stress or lack of sleep. He would also have seizures when he wasn’t metabolizing his medication the same way due to a growth spurt. We do what we can to avoid these triggers as best possible.

Still, sometimes they break through and we keep an open line of communication with his neurologist.

As much as I would like to say that my fear over this diagnosis has eroded over the years, it definitely has not. I look at Ben every day –– my son who has my eyes and his father’s dimples… My amazing, intelligent, warrior of a child.

For a split second, I am back in that moment when the phone rang and panic ran through me. Then I have to remind myself how far we’ve come. Through Ben’s tailored treatments and our own education on epilepsy, I know that my son is okay and I am confident that he always will be.

On Epilepsy Awareness “Purple” Day, the story of my family is just one in a cacophony of voices telling their own.

We each have unique journeys but have the shared understanding of the need to bring awareness to this disorder and to remove the stigma attached to it. When we educate through our unique yet shared experiences, we help others who may not be on that journey or are just beginning their own.

Awareness is important; getting rid of the stigma is our goal.

Ben is just one of approximately 50 million people worldwide living with epilepsy. We encourage you to wear purple today, learn something about epilepsy, and help us end the fear that surrounds it.

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